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Setting boundaries when you have lupus

One of the most challenging part of having lupus is setting healthy boundaries with certain family members or close people in your life.

Throughout your lupus journey you will likely encounter instances where people will want to infringe upon your life their opinions, reactions, advice, and projections about what you should (or shouldn't) be doing. These often-intrusive statements and actions can be more unpredictable than lupus itself. That is why setting boundaries when you have lupus is necessary to maintain your physical, mental, and emotional well-being.

We hope this blog at least helps you start to process what your boundaries are, and why they are important to be acknowledged for setting a healthy relationship with yourself and others.

What are boundaries?

Boundaries are limits people set in order to create a healthy sense of personal space.

Here is an abbreviation to remember the word boundary.

Be assertive – say what you mean and mean what you say.

Own what it is you set – identify what boundaries are necessary and own your decision.

Understand that there will be resistance – people are used to your family role. They are not used to boundaries, and it will take time for you and others to adjust.

Notice – pay attention to whether or not your boundaries are wavering. Are you causing confusion due to inconsistent boundaries or are you being clear and consistent?

Don’t give up – setting boundaries is new and can be challenging. Don’t give up just because someone may try to violate your boundary, keep being assertive and standing your ground.

Assimilate – keep true to your word because all you have to believe is what you tell yourself. This means you need to change your behaviour to match your intentions and the changes you are making.

Remember – it is important to remember that healthy boundaries will keep your relationships healthy. Boundaries help prevent enmeshment and are part of self-care.

You matter – your well-being is just as important as everyone else in your life. If you aren’t taking care of yourself and being your best self, how can you help anyone else? No matter how uncomfortable it is to set boundaries it’s an important piece of having healthy relationships.

Coping with an unpredictable and incurable illness like lupus is stressful. Living with lupus may induce fears about the future, especially when attempting to navigate shifts between flares and remissions and good days and bad. These fluctuations can perpetuate a sense of helplessness, making it feel like your lupus has become the maestro of your life and you are but a mere player being led by its every command.

The stress of those feelings and the “fear of the unknown” may cause intense anxiety, worry, anger and sadness. However, setting healthy boundaries promotes a sense of autonomy.

This article is intended to inform and give insight but not treat, diagnose or replace the advice of a doctor. Always seek medical advice with any questions regarding a medical condition.


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